Meet Marzi - guest blog post by kp

The following is a post by guest blogger kp.   She of infinite kindness and outrageous generosity has become one of my best friends and a invaluable support throughout the last few years.  In moments when I think I might drown, she is the first to offer a hand up.  You can read kp's smart insightful blog about her life with ME/CFS at Life in the shadows and her crafty and delicious mirror blog about creativity and the beauty of life at Turn your face to the sun

Meet Marzi by kp

Amara Campbell is a vintage-loving bowerbird.  She has a bit of thing for owls.  And trees.  And definite views on fashion. Intelligent, generous and hilarious, she is a born writer.   She's a bright shining bombshell of a woman.  She has a smile that wins you over instantly.  When you look at old photographs of her surrounded by friends you instantly see that she's one of those people who lights up a room.  

She is also very very sick.  She has had ME for more than a decade.  And this illness is doing all it can to dim that inner light of hers.  

I met Marzi a few years ago, not long after I joined facebook.  She was the first person with ME I found on there who I really clicked with.  We were born a couple of months apart, shared a lot of the same interests and got along like old friends right from the word go.  Quite quickly we got chatting about the possibility of starting up a local online support group and in the middle of a conversation about this she disappeared for a minute and came back to let me know she had just set one up!  I was more than a little gobsmacked at her 'just do it' attitude.  And I think that was my first real indication of the person she is. 

That local group has continued to go from strength to strength, and remains one of the most supportive and friendly environments I have come across on facebook.  I attribute that in no small measure to Marzi and the way that she leads.  She has such passion for changing things for people with ME/CFS.   In the midst of everything that she is currently dealing with she recently set up an awareness and advocacy group called 'Change for ME' (in partnership with Lee Lee).   Recently she told me that the reason she pushes her health beyond its limits on this front is because she feels she doesn't have a long time to do it if things continue the way they are. 

In the time that I have known her Marzi's health has gone markedly downhill.  I vividly remember one day getting a message from her asking if she could call me.   She was struggling to cope with one of the first episodes of dystonia (actually ending up at the hospital not long afterward).  It was hard to even understand her as she tried to explain through the tears what was happening.  Her fear and suffering were unmistakable, her distress palpable. 

Since then the dystonia has become more severe, unrelenting and increasingly resistant to treatment.  Before the neurological damage is irreversible she desperately needs to see the specialists who may hold the answers to the mystery in her body that is holding her hostage. 

The warrior woman who is always fighting for others now needs people to form a web of support around her.   
  

The video below was created recently to try and give people a little glimpse into the suffering that Marzi deals with daily.   Of course much of this is felt and not seen, however the dystonia - a movement disorder causing muscles to contract and spasm involuntarily - is blindingly obvious (and incredibly confronting).  

It is heartbreaking to watch a friend suffering like this and I will do everything I can to change things for her.  I believe that anyone who has knowledge of what she is dealing with will also want to do everything in their power to help.

You can find the Aid 4 Amara page with more information - look in the 'about' section at the top of the page - on facebook.  Or if you'd rather avoid that strange land some information can also be found on the Giveforward site (where a page has been set up to allow international donations).

Change for ME Australia

What I want to know is this. If you were suffering. If you were either in and out of hospital or simply so weak that you couldn't function, would you like to think that people would help you? You would wouldn't you?  

What if you didn't have the option of financial support from family. And if your illness for some bizarre reason, even though life threatening and more disabling than many known illnesses, didn't qualify you for government support. If you then were left in a severely disabled state, with no family support, no financial support, and no charity dedicated to helping you. And you couldn't access the medical care you needed and you were young. Young enough that the fifty years stretched in front of you looked like too hard a journey, when frankly the next fifty minutes was too hard.  What would you do?

We all like to think we are good people. We like to think we help. But do we really? How often do you see your sick or elderly family or friends? Is twice a year or even three times, enough?  What have you done to help them lately? Have you asked them if they are okay? Have you asked them what they need? Have you considered that everyone is thinking the same thing, that someone else is helping them?  That it is not really my job, not my responsibility. But if everyone is thinking that, who is left?

I am living with an illness that as many as 200,000 Australians have. And of that 200,000, there are up to 40,000 of us who are house or even bed bound. It makes me so furious I can barely breathe at the injustice of it. We are suffering. We are alone in our fight. And NOBODY is helping us. I couldn't stand by and watch this when I was healthy. And I sure as hell can stand by and watch it now as more and more of my community fall through the cracks, become suicidal and completely disempowered by government and the community's collective deafness to our plight.

We will not let that happen. And I want you to help us do the right thing. I want you to stand up for people who can barely stand up for themselves. This will be looked upon in coming decades as a shameful period in our health history. That people suffered as I do, as we do and nobody is doing anything. Yes there are great doctors doing research and yes there are brave doctors treating us. But they need support, they need help. It is too much, the weight of so many of us on the shoulders of so few. It is shameful. If I had a recognised illness, government would subsidise my treatment and a charity would provide me support.  I would have help with cleaning and cooking, with running errands, with doctors appointments.  There would be choices and options everywhere I looked.

Instead I have ME/CFS and my symptoms have become so acute that in moments I cannot remember who I am. My language has become so muddled that the name of simple things like chairs or tables elude me and in moments the best I can manage is nonsensical noises.  My pain can be so consuming that for days I am stuck in a dark room unable to move. And my weakness so great that my heart strains when I move.

Still when lucid, I cannot stop thinking about my community. My brave, beautiful, strong, courageous community. And I with another ME/CFS warrior started a page to make a positive change for people with ME/CFS. So that future generations do not suffer as we have. We are called Change for ME Australia.

Please watch this video:

And then follow us on Facebook  Change for ME Australia and Twitter Change4MEAu

One day soon.  We will see the positive change that you helped create.  Please join us today and be the change we need to make a more positive future for people with ME/CFS in Australia.

Voices from the Shadows

All around the world, even now as we speak children are taken from mothers and the gravely ill are sectioned in psychiatric wards. ME/CFS has a torrid history and the medical profession is left useless in its wake, relying then on the tried and true strategy of blaming this enigmatic illness on the patient.

We who suffer with this illness, become cynical and hardened by the constant fight. By the need every day to gather the willpower to choose to keep fighting this unwinnable battle, while on the sidelines the medical profession yells taunts and derision at us. Their inability to puzzle out our illness, makes them condescending and dismissive. They are stymied by  ME/CFS and rather than treating it as a common enemy, they turn on us.

Right now in Spain a very sick child has been taken from her very ill mother. Even though leading Spanish ME specialists have declared that the child has acute ME and should not attend school on days she is too weak. Even though a judge declared that challenges made by the government to remove guardianship from the mother (also sick with ME) was not in the child's best interests. Even then, the Spanish government has taken this child and put her in a psychiatric ward and refused the innocent mother access to her sick child.

In England a man visiting from Canada who was also very ill with ME has been sectioned in a UK hospital. And this is not just a foreign problem. It happens to Australians too. It has happened to two people I know. Likely more, because it is a shameful thing that people do not want to share.


There is an estimated two hundred thousand people in Australia with  ME/CFS.  Of those a likely forty thousand are house or bed bound, silently screaming for help

The film Voices from the Shadows is a documentary film created by family members of a severely ill ME patient. It speaks for those of us who are unheard. It is important viewing for everybody, but crucial viewing for anybody who loves someone with ME/CFS.

Voices from the Shadows Trailer from Josh on Vimeo.

A reviewer from the Chicago Sun Times has written a review almost as moving as the trailer. Scott Jordan Harris ironically is also a soldier in our war. He too has ME. It is worth a read A howl of desperation for those who cannot howl

My record player is emo

We live in a world where we are constantly prompted with subconscious social markers and clues in order to help us behave appropriately and to know what to expect. When you watch a TV show, whether you are aware or not, you will know by the way the camera moves, what type of scene is about to take place. If the camera is watching someone through the branches of a tree you will know that character is being spied on, but if the camera moves slowly from behind the tree and just watches the character from a distance, you will know the character is having a pensive moment and the imagery suggests they are given space.

When you watch a movie, the music or sound will communicate what type of emotion they are prompting from you. The melancholy music or dramatic sound effects getting you ready for the emotion of the upcoming scene. Those of us with severe CFS/ME have a sound-track of atmospheric melancholy music that changes in moments to vintage comedy capers music to coincide with our daily slapstick routine or shifts to threatening thrumming bass as we near death, only slowing down to turn back to melancholy.

There is not often hopeful music, or even a camera panning to the sky to say goodbye, instead the camera discreetly backs out of the room, us in centre screen skin looking translucent white, eyes blackened, lying heavily in bed surrounded by medication having completely given up the pretence of a pretty room for the practical needs of survival. And maybe there is a script in the end credits describing our continuing fight and running statistics on the truth about death and severity of CFS/ME.

The psychology of CFS/ME is not like other illnesses. We do not get given a package of information about statistics and treatment options, the likelihood of survival and how to better our chance to achieve that nor do we get to look forward to the sweet relief of death and the acceptance of having to say goodbye. We do not wish for death, but we wish for closure, for escape from the torture of uncertainty. Our ultimate wish would be to hear hopeful music, see a montage of us over the years in various states of decline and then some miraculous treatment turns us around and you get to see us building up our strength and working to get our lives back.

Unfortunately for most, that is not what our experience is. And what I've realised is I've grown tired of waiting to hear the triumphant music. That I hate my emo record player and it's evil addiction to dark whining notes. What I wish to do is change it, but the ceaselessly moving floor and my inability to walk properly makes it impossible for now.

So I live my life in intervals, small snatches of clarity, tiny moments of balance very rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the psychology of CFS/ME. We struggle to balance on an undulating floor that moves to no discernible rhythm, unwillingly swaying to the atmospheric melancholy siren and wishing to hear a joyous symphony.

His name is ME

I must warn you, there is no escaping him. He comes to you like a jaunty salesman, using sleight of hand to sell you lies. When he asks you what you hope for, what you dream of, don't answer. He will not give them to you, he will take them from you. He is a dream eater, a hope stealer, a futures thief.

Imagine the things you love to do, the simple things, the fun things, the silly things. Now imagine the things you hope to do, big and small. Just like that he tricked you into thinking of them, and now he has stolen them from you. Gorged himself like a junkie on your hopes and dreams, so he is fat and satiated and you will go mad with the loss.

From now on you cannot travel overseas or go camping, you cannot go out to the pub or dancing, you cannot go shopping or to picnics, you cannot go to the movies or to a salon, you cannot play sport or exercise, you cannot cook dinner or drive to get takeaway, you cannot garden or even compost, you cannot walk your dog or clean your house, you cannot drive or some days walk.  And for the future, you cannot work or study, you do not have financial freedom, the pension is sparsely enough to allow you dignity, you cannot have children and you may not ever find love, you cannot own a house or build a house, you cannot buy a car new or old, you cannot live where you want, do what you want or be who you want to be. You cannot do anything by yourself. Rarely, if you are lucky you might get to do one of the can-nots but it will be at the whim of others, you cannot choose anything for yourself.

He tricked you, and now until you die your living will be like dying. But his sleight of hand is like artistry and while you live with that horror, it will be invisible to the outside eye. Occasionally your hopes will be raised when you think a discerning eye has seen through his trickery, and then you will deflate with the realisation that they have not. His mark is indelible, and he has pulled a heist so complicated you would admire his genius were you not the victim. Because while you suffer the withdrawal of your future, you will also be wracked with pain, exhausted beyond comprehension and barraged with symptoms so rare others will wonder if they are makings of your own creation. You would laugh at his audacity at the ridiculousness of his plan, but it is working. You are alone, you are close to death, just close enough to prolong the torture, not so close to death that there is relief. And yet no one sees you, no one is watching and slowly they forget you. He has alienated you so effectively that your voice is no longer heard. He has made you so small, taken everything from you, left you weak and desperate without any hope for the future.

He has the last laugh. Because when you try to tell people his name, they will look at you with incredulity. His name is ME.   

Symptomatic

My chin juts forward pulling my neck into taut visible ropes of muscle, then swings abruptly to the left drawn magnetically to a target I cannot identify, my shoulder raises in a one sided swinging shrug to meet it. My head juts forward again, eyebrows forcing themselves up announcing a surprise I do not feel, and my upper body twists. The movements are spasmodic, violent and unpredictable. It is as though my neck has lengthened and all my joints loosened, my movements not unlike a puppet with an inexperienced puppeteer, disjointed and violent. The muscles that run between the joints strain to contain and control the forceful contortion, tightening into knots of pain as they contract and release.

I try to speak and it is as though I am verbally constipated, my eyes roll sideways and upwards, my chin juts forward again, my throat constricting. Words come out eventually but they are garbled, half strangled or they stutter out in increments.

When I try to rest my body rises suddenly and frequently off the bed, like a patient being shocked with defibrillator paddles. My eyes feel as though they are bugging out of my head, they strain to break free of the constraints of my eyelids, darting dramatically to the side or scrunching emphatically like a child learning to wink.

These symptoms built up over a few days last year before I realised I should probably go to the hospital. Since we get so many weird and wonderful and ultimately inexplicable symptoms, I have a policy of giving new oddities a few days to subside before I investigate them.

This one required attention though and when I attended emergency, the doctor asked incredulously why I had not come earlier. What I was suffering with was an acute dystonic reaction to medication, so acute that staff from far and wide came to watch me do the drunken uncle contortion dance in my seat while I waited for treatment. The treatment was a reversal drug, Cogentin, given intravenously in an injection. Problem being of course that the puppeteer refused to relinquish the marionette strings, so like a possessed or crazed patient, I had to be held down by two nurses, a doctor and my sister. And still I writhed, the spasmodic disco increasing in intensity until they pinned me down again to administer another injection.

The thing is, a decade ago, before I was ill, this series of disturbing neurological symptoms would have had me scurrying in a panic to the emergency immediately. But with hard won experience of sceptical, dismissive and condescending doctors, I avoid emergency rooms unless it is absolutely necessary. Even then I am loathe to go. Because when I go to the hospital despite the clear acuteness of my illness and whatever symptoms are threatening my life at that moment, the doctors put on their blinkers, become tunnel-visioned and refuse to see what's right in front of them. I could be having a heart-attack in front of them and they would simply raise their eyebrows at my theatrics.

I am now suffering my third bout of Dystonia. And I am not sure why the latest attack has happened. But how incredibly sad is it that, their behaviour, causes me to suffer unnecessarily rather than face their discrimination?

So instead of avoidance, I have decided in future to pose a few questions to my treating doctor/s. (Well in the case I can speak, otherwise I might just have to type them out.) Firstly, do they love anyone who is ill with CFS/ME? Secondly, if not, have they read ten or more research papers on diagnosis and treatment of CFS/ME in the last year? Thirdly, if their answer is no to both questions, how can they be so arrogant as to assume to speak with any authority on my illness? Their qualification to speak on CFS/ME is non-existent. It would be like a biologist attempting to speak on entomology. They are both sciences, but they are poles apart. And lastly, with no appropriate qualification I would appreciate that they reconsider their perception of my illness until they are better informed.

In the meantime I will suffer this contorted dance, symptomatic of acute Dystonia and I will dread the hospital and their derision, symptomatic of the medical industry's continued pursuit of ignorance of our illness.  Somebody investigate the cause of the symptoms, please and then we might find treatment.

T.A.T.

My world has become more and more insular, more separate and the outside world more alien. Partly it has been a coping mechanism, partly it has become the natural rhythm - or should I say stutter - of my life but mostly there has been no choice.

With my world getting smaller and smaller, I have spent too much time journeying inwards unable to journey outwards. I have always thrived on interactions with others, socialising, mingling, bantering and making connections. But I am no longer adept at it and like an unenthusiastic guest at a dinner part I feel uninterested and unable to muster the energy to engage. The exhaustion and pain make everything baffling and nonsensical. And the loss of vocabulary combined with my loss of cognitive function and short term memory problems make me feel clumsily inarticulate, uninteresting and surreal. And with the loss of that interaction, that affection, that laughter, that stimulation, my heart muscle has seized up into a painful knot.

I am a perfectionist and I have always been articulate, a great conversationalist, gregarious and sensitive to others. Now I struggle with how to balance that through the frustration of this illness and my severe physical restraints. And with the loss of my sense of self, I have inadvertently become stingy. In the past I could have said with all honesty, completely unflinchingly that I am a great friend with a really generous spirit. But that is not true any more. I am not a terrible friend, but I am not what I was. Visiting so often with death last year changed me, marked me, and made me darker. I saw the truth of people without the romance of life in the way, and many let me down and broke my heart. So I have become more selfish, less tolerant and markedly less generous with my heart and emotional energy.

For a long time I have felt unlike me, lost and foreign. And I realise now that it is not just illness that is robbing me of myself, but that it is me who has locked me in the basement of my heart unable to communicate with the world. It is me that is keeping me separate. And by being so inflexible with my expectations of myself and by trying to protect myself I am hurting myself. By closing off myself and my heart, I may protect myself from heartbreak, but I don't let anyone or anything else in.

One of my biggest fears with this illness has always been that I would become a self involved twat. And by spending so much time alone I have become a little egocentric, because I needed to to survive, but also without outside influence perception becomes skewed. The inward journey has embittered me with struggle, hardened my heart, closed me off and made me what I feared... a bit of a self involved tight arse twat (T.A.T.).

So for those who managed to get through the minefield in the last year or so, thank you for persisting you brave little soldiers.  And for those whom I love, and yet I have not been as available to, things will be different. I cannot promise I will be as I was before, too much has happened and illness makes consistency near impossible, but I will try to give you the love you give me. You deserve it.